Hi guys, long time no speak I hope my post finds you all doing well?
I was diagnosed with APS (triple positive) in September 2016 after a series of TIAs and having a Carotid Endarterectomy in June 2016.
After the wake up call I changed my job and lifestyle in August 2016,after 30 years of on the road face to face sales, I had piled on weight and at my worst was 18 stone 10lbs very sedentary and smoked, I gave up smoking and the new job in an office environment was just over 3 miles away so I cycled to work every day. Over 2 1/2 years my weight has gone down to 16 stone 7 lbs and at 6ft 2 1/2 " with a big build , life was great and I feel so much better.
At the end of December 2018 I went for a routine bowel screen because I'm 55 and there was some bleeding and they found some polyps, I was booked in for a full colonoscopy and polyps removed because of the bleeding risk and APS my warfarin was stopped and bridged with Deltaparin for the procedure. On the day my INR was 1.0 and my therapeutic range is 2.0 to 3.0, all went fine and then the increased Warfarin and Deltaparin bridge was put in place. Sadly during this period I suffered a right side Lacunar Stroke and it has affected my left side.
Luckily it is a mild stroke, no face droop and I can talk ok but my left side weakness in arm and mainly leg are frustrating and upsetting considering how well I was doing.
The polyps were benign thankfully and I know in time my strength will improve however I will have to go through the check again in 12 months as there were quite a few polyps, my concern is if I have to have same procedure what will happen with my INR and I don't want the same thing to happen again. My question is should the health professionals have done anything differently or was I just unlucky like the consultant on the stroke ward said? Btw both my carotids were scanned and clear and my general health, SATs and fitness were very good which he said would have helped in how I was affected etc.
Apologies for lengthy ramblings
Dean from Leicester
Written by
DeanJ
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I am extremely sorry this has happened. It must seem especially disheartening to you personally to think about any loss of physical ability in light of such strides you have made with proactive choices to prevent the very thing that just happened to you.
Many of us here are faced with this very dilemma- routine procedures to ,” protect / screene” our health.
Some of us undergo brief reduction in anticoagulation then bridging for necessary minor procedures.
Others still find they may need more serious , major operations.
The answer to your question is that there are bridging protocols for APS patients specifically that do not apply to other non APS patients.
It depends on the procedure itself. The doctor would need to call the hemostasis / Thrombosis department of gust and st Thomas, or UCLH. There is a surgical bridging protocol.
Of course that is the most basic of answers.
To answer your question specifically, I’ve not had this done. Others will come on who have and tell you how their doctors have handled it.
I’d like to finish by saying honestly how impressed I am with you! You’re quite inspirational!
Thank you for your kind words, I still remain positive and will get back to work and on my bike asap as I know it has made me feel so much better.
At present I am very tired and my INR is fluctuating wildly 4.7 two days ago and sadly my leg particularly feels drunk and as if it doesn't belong to me with rest and physio starting next week I WILL fight back.
I completely agree with what has been said here about 'bridging protocol' which clearly needs to be followed with a patient with Hughes Syndrome/APS. Well done on your fantastic changes to your health regime, I am somebody who works out daily to keep myself strong, and keep my weight down, so I know how satisfying that it. I hate it when I am not well enough to do it. I do suggest before any further episodes of investigations regarding procedures that you have a meeting with your team regarding your anticoagulation/bridging plan. Your hospital will have a plan for this, and yes it would be good to be referred back to Prof Hunt again. MaryF
I stopped the Warfarin 2 days before and Dalteparin the day before the procedure , under instruction, all I know was my INR was 1.0 when I had the procedure done and even though I was taking both anticoagulants after my INR was still at 1.1 two days later even though they doubled warfarin to 6mg and Dalteparin to 10,000 twice a day!
The other day my INR was 4.7, seeing Dr Gooding my consultant in a couple of weeks so will discuss range with him then.
I am and always will be positive I was just a bit frustrated and I am so tired my body is not letting me do what I want too at the moment, though I do consider myself lucky in comparison to how badly affected some of the poor people were on the Stroke ward.
So disheartening this has occurred...Ive been in your shoes. As apsnotfab states it will get better.
My mantra is your mind believes what ever you tell it, tell it good positive things: “i am healthy, i am strong, i can do this, nothing can get in my way”! Good you are positive because sometimes it is hard to remain positive, thats when you must revert back to your mantra. Stay strong and carry on. I wish you much success. Cindy
When I had my last pacemaker installed my doctor didn’t stop my coumadin. He cut it down so that I was in the 2.7 range. He was worried because I had some bad problems previously when coumadin was stopped.
So maybe you and your doctor can come up with a compromise.
When I had my stroke my kids thougjt I was drunk!! In those days I did like a tipple!!
Even now 20 years later if I'm tired I slur, drag my leg. Ice got back to an even better fitness than before - passing all fitness tests to get into ambulance service, so really proud!
Sod those that think I'm drunk, I've learnt to listen to my body & follow my instincts.
The only one to listen to is 'you' rest if need be and give in occasionally. Fight too, easy fir the small battles but think big - win the war!
So sorry to hear this.I have just had mine done.I stopped warfarin 3 days before and bridged with clexane those days.day before procedure INR 1.1 which should be.procedure day evening started back on 8mg warfarin and clexane.still did both but extra warfarin dose til back in range for 12 days.
Guess our bodies react differently and yours reacted badly.I do wish you a speedily recovery.Life can be crap at times
Others have given you great advise. I used to have regular colonoscopies thankfully without problems.
With regard to your tiredness you will get that, listen to your body rest when feeling tired. I know that’s frustrating,but long term it will be of benefit, I get tired a lot, so do a bit, rest a bit etc, if you push yourself too much it will make things worse. Mighty oaks from little acorns did grow.
I am waiting for a physio appointment with the community stroke team and in the mean time I'm trying to keep as mobile as possible. The biggest frustration is my leg keeps buckling and the tiredness but on a positive note my left arm strength appears to have improved slightly.
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with rest and physio starting next week I WILL fight back.
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